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Case Three: I Really Can’t Acquire Important Data?

John is a research professor in sociology. He knows from past experience how hard it is to get data on sensitive research topics. Nevertheless he wants to evaluate the effectiveness of registry websites for convicted sex offenders. Understanding the lives of sex offenders after release from prison is important to developing programs that stand the best chance of rehabilitating them and safeguarding society. Therefore, he plans to survey the sex offender population listed on websites to advance understanding of the experience of being listed on such a registry.

Certificate of Confidentiality:

“A Certificate of Confidentiality helps researchers protect the privacy of human research participants enrolled in biomedical, behavioral, clinical and other forms of sensitive research. Certificates protect against compulsory legal demands, such as court orders and subpoenas, for identifying information or identifying characteristics of a research participant.”

- US Dept. of Health & Human Services

John reasons that the study will be useful only if he obtains a representative sample and open and honest responses from participants. To obtain a representative sample, he plans to mail a survey to a group of 100 individuals listed on his state sex offender registry. To obtain open and honest data, he proposes to offer the strictest of confidentiality protections. The consent form he submits to his IRB mentions that he will obtain a Certificate of Confidentiality from NIH and that under no condition will he share identifiable data gathered during the study.

John’s institutional review board (IRB) refuses to approve the study as designed. Their letter requires many modifications, but two pose a particular challenge to John’s ability to acquire the data he wants. First, they state that the public registry is designed to protect the public not to facilitate an invasion of privacy. They propose that he recruit by advertising his study. Second, they insist that his consent form detail conditions under which he will, in fact, be required to breach confidentiality, e.g., if participants mention ongoing or planned abuse of children or the elderly.

After spending an hour on the phone, John is exasperated. The IRB is unmoved by his observation that sociologists are not mandatory reporters in his state. He also tells the IRB coordinator that he finds the IRBs decision ironic: He wants to gather data to prevent recidivism among sex offenders to protect people from becoming victims; yet the IRB is preventing this in the name of defending potential victims through mandatory reporting. They are worried about the right to privacy of the sex offenders, yet they also want to weaken their protections by requiring him to breach confidentiality. Disgusted, he hangs up on the coordinator.

What should John do?

Discussion Questions for the Facilitator

Is there a way John can get honest data from a representative sample?

Are there some data that simply cannot be acquired?

Are human subjects protections the only reason why we might not acquire some knowledge, or is there “forbidden knowledge”—things we’re best off not knowing? *

How should society prioritize protection of research subject confidentiality relative to reporting of crimes? *

Have you ever had an oversight body prohibit you from conducting research as you proposed it?How did you deal with it, and what lessons did you learn?